I wrote this back in 2003, it was used as a campaigning tool and appeared in the local press. Following on from my post yesterday I thought it might be worth a revisit. Writing my last post took me back to the time we were campaigning for a short breaks. I hope that as a result of Aiming high for Disabled Children that things have improved. Sadly I think there will be parents of younger children who may relate to this…. some things don’t change and some people still don’t “get it”.

G was 13 year’s old at the time, he’s now nearly 22. He’s now leading a good and happy life …more of that later, but for now…. think for a moment and imagine!

You may be a new parent learning to cope with demands on your time and energy you barely thought possible. Or maybe you have older children. Think back to the sleepless nights, we all had them, the endless crying of a permanently hungry infant. How exhausted you felt then. How can one tiny human being be so exhausting?

Now think for moment and imagine…………………..

Those sleepless nights never went away and you can’t see a time when they ever will.

Remember when………

Going out for the day meant endless equipment and your car boot looked as if you packed for a week’s holiday? How glad you were when your kids were out of nappies, out of pushchairs and a day out meant you, your kids and just one handbag.

Now think for a moment and imagine..

You still have to change nappies, only now your child is 10, 11, 12, 13 or older. Even disabled toilets don’t cater for children like yours and you have to change him on an often-dirty floor. You still have endless equipment, nappies, wipes, a change of clothes only now there much bigger, the pushchair is now a wheelchair, it’s heavier to lift and so is your child and you wonder how much longer your back can take the strain.

And those sleepless nights never went away and you can’t see a time when they ever will……..

Remember when…………

You had to feed, bathe and dress your child? mashing up food, pureed vegetables and the endless wiping of sticky hands and faces. How glad you were when they could finally wash, dress and feed themselves.

Now think for a moment and imagine………………

You still have to feed, bathe and dress your child and deal with all their personal care only now your child isn’t a child anymore and personal care means so much more than a warm bubble bath and teaching them to clean their teeth and wash their own face.

And those sleepless nights never went away and you can’t see a time when they ever will…….

Remember when…….

You lost your social life, we all did it for a while, accepted it when our children were small. You were too exhausted to go out, unable to find a babysitter, being woken in the early hours, it wasn’t worth it so you didn’t do it.

Now think for a moment and imagine…………….

You still don’t have one, you still need a babysitter, only now no one else can deal with your child anymore, babysitters are harder to find, your child is too old, her behaviour too challenging, her nappies too big and her personal care too personal.

You can’t go to a friend’s party, barbecue or a family wedding, because your child’s behaviour is too difficult to cope with in that situation. Or having to rely on special equipment means that it’s impossible to stay anywhere other than home. And holidays, what are holidays? That’s when you move house for a week if you’re lucky and come home so exhausted you wonder if it was worth the effort and the expense.

And those sleepless nights never went away and you can’t see a time when they ever will………….

Now add to that……..

Being stared at on a daily basis. People, staring at your child, with disgust or worse pity. Your child, the child you love, no more no less than your other children, The child who lights up your world with his smile or his laugh.

Now add to that……….

Having to ring and tell a total stranger (a social worker) you can’t cope anymore, in tears, through sheer exhaustion, you’re desperate, you need help, just a couple of nights a month, just a break, that’s all! You have tried so hard, coped with so much, but now you can’t physically, mentally or emotionally do it anymore.

And then imagine being told “I’m sorry, we have nothing available” Or “You’re not eligible for help, we have others with much greater need than yours”. Or we will come and assess you, but don’t build your hopes up”

Now add to that………..

Going to County hall, sitting in a room full of strangers (county councillors) pleading with them, begging them not to make cuts to services that you and others like you so desperately need. When all you want to do is, not be there, not be doing this and just to be getting on with your own life, without interference, like everyone else.

Then imagine them telling you, they haven’t the funds for things that will make such a huge difference to your life, they understand how you feel, they understand how difficult your life is, but they just don’t have the money. Then watch them spend money on a council newsletter, or revamping their offices, or re-paving the streets. Then blame central Government for not giving them enough money.

So you write, letters, you campaign, you lobby the government, and they tell you, your local council is responsible and to take it up with them. They allocate money to your council; your council gets more than others, or at least the same. Then spends money on funding a war that no one seems to want.

You’re still exhausted but now you’re angry and frustrated, no one is listening, no one cares, no one takes responsibility, no one is accountable. It’s someone else’s problem, it’s a shame, it’s a fact of life, but that’s how it is!

Through all this there’s your child, the child you love, no more, no less than your other children. The child who lights up your world with his smile or his laugh. He’s not a young a child any more. But, now babysitters are harder to find, his nappies are too big, his behaviour too difficult, his personal care too personal. You’re exhausted, you can’t cope, you need a break, just the odd night a month that’s all, just a little help, you’ve tried so hard coped with so much.

And those sleepless nights never went away and you can’t see a time when they ever will…………

Imagine this and you have imagined what life is like for thousands of families across the country, maybe you will have some, just some idea of what life is like bringing up a child with severe or profound disabilities. I’ve left out a lot, I’ve left out hospital visits, the effects on siblings, arguments about education and countless other pressures, not to mention the emotions involved.

I want your understanding not your sympathy. I want you to feel angry that families like this are forgotten and ignored in Government statistics and targets, that families like this are made to fight for every little bit of help they receive and then have to continue to fight to keep it.

Families like this need short breaks (respite care) so they can live somewhere near a normal life for a short time each month. These are not special families; they are families just like yours. They were not chosen for this role nor did they chose, it just happened it was indiscriminate of class, race and circumstance, but they love their children and want to care for them at home as valued members of their families.